In this issue, Jayme Kornfeld, the new president of the Foundation's Northern California Chapter and a patient living with limited systemic sclerosis, describes her first experience visiting with leaders on Capitol Hill with "Voice" readers.

A team of
scleroderma advocates visited Washington, D.C., to meet with legislators in
February for the Scleroderma Foundation’s National Congressional Call-in Day.
These dedicated scleroderma supporters, many of them patients, told their
personal scleroderma stories to their congressional leaders and staff members.
The group also hand-delivered thousands of signed petitions, asking elected
leaders to co-sponsor the two bills that make up the “Scleroderma Research and
Awareness Act.”

About the “Scleroderma Research and
Awareness Act”

This
bipartisan legislation is made up of two bills: H.R. 1672, introduced in the
House by Rep. Lois Capps (D-Calif.) and Rep. Lee Terry (R-Neb.); and S. 649,
introduced in the Senate by Sen. Kirsten Gillibrand (D-N.Y.). The legislation
proposes increased funding for scleroderma research and awareness campaigns.

Wednesday, Feb. 8

8 a.m. – Just met the other patients
that are going on the appointments today. I ate a hearty breakfast because I know
I’ll need the energy to keep going all day. Our schedule is packed with
appointments every half hour. This is going to be a very fast-paced day.

9:30 a.m. – At Sen. Roy Blunt’s (Mo.)
office. The office is small and buzzing with activity. I listened attentively
as Mary Blades, president of the Missouri Chapter, and Darren Webb, a lobbyist
from the Health and Medicine Counsel of Washington, took the reins. They each spoke
about the bill and its importance. Before I knew it, it was time to move on.

10 a.m. - We split up for the next
meeting. I joined Evan Busman, a support group leader from Atlanta and board
member of the Georgia Chapter, and headed to Sen. Johnny Isakson’s (Ga.)
office. We talked about the difficult process of diagnosis and how it can take
a really long time with diseases like scleroderma. We found a connection with
one of the senator’s assistants, which was crucial. A member of the Senator’s
staff

just had been diagnosed with lupus and went through all of the
uncertainty that goes along with the diagnosis. Now, I know he will remember
us.

12:30 p.m. - Up next is Rep. Lynn
Woolsey from California. Funny enough, we didn’t have anywhere to meet, so we
had our meeting standing in the hallway. Rep. Woolsey was a co-sponsor of the
bill, so we spent our half hour sharing our stories and thanking her office for
all of their support.

1 p.m. - Quick change in the
schedule. Sen. Dianne Feinstein’s office (Calif.) was able to see us at the
last minute. Being from California, I would do the majority of the talking. I
immediately found a connection with Sen. Feinstein’s assistant, as we called
the same town “home.” During this meeting, I talked about my career being cut
short by my disease. The assistant seemed to understand, and we walked out
feeling that a good word would be passed on to Sen. Feinstein.

3 p.m. - What an incredible meeting!
We lucked out and met with Rep. John Lewis (Ga.) himself. He was SO nice and
really seemed to want to support us and go to the next walk in Atlanta. What an
honor it was to meet him. We were all a little star-struck.

5 p.m. - The end of a very busy day.
Among all of the teams, there were 38 appointments in all. It was great to see
how the legislative process works and to know I can make a difference. I am
exhausted, but I would do this all again in a heartbeat!

SHARE YOUR STORY TODAY

We urge the
scleroderma community to reach out to their elected officials. The best way to
reach your elected officials in the House and Senate is to call the U.S.
Capitol Switchboard at (202) 225-3121. An operator will connect you to your representative
or senator's office.

The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status. The foundation’s federal tax identification number is 52-1375827. Our primary goal is to raise funds for our three-fold mission of support, education and research. The foundation has 20 active chapters and 160 support groups across the country.